The Aword

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Hello, so it looks I am joining you guys :(
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TOPIC: Hello, so it looks I am joining you guys :(

Hello, so it looks I am joining you guys :( 2 years, 9 months ago #1619

  • Jonesy
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Hi,

My knee was injured and over the last 18 months I have evolved into a sufferer of A.

This was shown on the second MRI to my spine, with a slipped disk at L1 accompanied with stenosis and bundled nerves.

I am on 1200mg x3 daily of pregabalin, 120mg x 2 daily of dihydrocodeine, 1000mg of paracetamol every 4 hours, 100mg of amitriptyline, 3000iu of vitamin D and I am in agony still,

Does anyone else have any other meds that work of suggestions to relieve the pain please?

Re: Hello, so it looks I am joining you guys :( 2 years, 9 months ago #1620

  • helen
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Hi Jonesy

Wow you take a lot of drugs for pain management! I've only taken one pain medication at a time:-

The trouble is everyone's story with A is different and I refused meds for many years, and made do with valium to help me sleep at night. I was on amytriptyline until I couldn't tolerate it, then gabapentin but again couldn't tolerate it. Then pregabalin which thankfully I can tolerate.

My main problem is constant muscle cramps which no one can relieve.

I saw a pain specialist last summer and he kept my pregabalin low 100mg morning and night and also suggested Cymbalta 30mg at night which is an anti depressant but helps nerve pain. The combination improved my pain and my mental state to some extent! I also take Lorazepam to help cramps and to aid sleep. After 16 years with A unfortunately I am housebound most of the time.

I didn't find paracetamol helped at all and I've also had courses of vitamin D as I'm rarely in the sun.

I have a lot of internal bowel damage from my initial epidural so tend to avoid codeine and gluten.

Last year I started to practise self healing Reiki which I've found beneficial and have recovered sensation in my feet.

I hope you get some more replies, as I can only relate my experiences to you.

Take care and best wishes
Helen xx
The following user(s) said Thank You: Jonesy

Re: Hello, so it looks I am joining you guys :( 2 years, 9 months ago #1621

  • Jonesy
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Hi,

Thank you for your kind message

I don't leave the house much at all really, too painful and I seem to more invisible now I use a walking stick. Then I put more and more weight.

I wonder if anyone else has memory problems, I forget so much.

I never know what A will do next.

Thank you again xx

Re: Hello, so it looks I am joining you guys :( 2 years, 9 months ago #1622

  • kev
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Hi jonesy, i'm on a similar pain pill regime as you and suffer memory problems. I'm sure its the pregabalin.

Re: Hello, so it looks I am joining you guys :( 2 years, 9 months ago #1623

  • Jonesy
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Hi Kev,

Thank you for your reply.

The past couple of days I have woken severely shaking and I have total loss of my hands, everything I pick up I hold for a second or two and then my hands flail and throw them I have smashed glasses, dropped my breakfast. If I try to send a text message my fingers type random letters, delete letters, throw my mobile.


Is this normal?

Re: Hello, so it looks I am joining you guys :( 2 years, 9 months ago #1624

  • kev
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Well i didn't know for sure before but i also suffered those jerks with my hands/arms so it must be the Arachnoiditis then. Though you sound as though yo have it worse.
The following user(s) said Thank You: gmak
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